IP Symptoms

My daughter, who is 22 months old, has been recently diagnosed with IP, although the classical blistering stage never happened.  She only has some linear/mosaic pigmentation on her body, mainly the legs and hands, which have become evident only a few months ago, at birth they were either not there or very light in color and therefore unnoticeable.  Is there any test to confirm that my child does actually have IP?  And I wonder if it is abit too late to diagnose IP at this age and be able to treat any other complications, such as in the eyes?

[Moosespb]

Test with Baylor medicals at baylor college of medicine. You can treat any eye problems whenever you can. ITs best if you can get her seen asap. Id also reccomend a genetic councelor, since you are still learning about the disease. I have lived with IP all my life, and I have one child affect with it and one that is not. I have lost several babies due to IP so if you need anything give me a shout. Ive been there and done that.. I guess you would say, and Id like to connect and help others if I can

[IPIFSE]

It is definitely never to late to diagnose IP.  Your pediatrician should arrange a genetic test with Baylor College of Medicine in Houston Texas.  It is extremely important that you have your daughters eyes tested as soon as possible by a pediatric opthalmologist.  A description of how to do this is below and on the web site www.********.  Print it out and give it to the Ophthalmologist.

A dilated fundus exam as soon after birth as the neonatologist or anesthesiologist thinks it is safe.  Sometimes, if there are any suspected retinal abnormalities, an examination under anesthesia is required.  The important thing is for the ophthalmologist to look at the optic nerve head, the macula (in the center of the retina), and the far peripheral retina where, the typical pathologic events tend to occur.  This should be done before the babies leave the hospital.

Severe retinal disease is often associated with brain dysfunction and is a marker to pursue x-ray scanning studies of the head.  With respect to the eyes themselves, some babies with IP, and even some older patients, might benefit from laser treatment in an effort to prevent retinal detachment or vitreous hemorrhage from the consequences of the typical retinal neovascularization that occurs in this disorder.

If you have any aditional questions please call me.
Susanne Emmerich
Exec. Dir. IPIF